Living with cancer blog

Words matter in supporting cancer survivors

"Sticks and stones may break my bones, but words will never hurt me." That didn't seem true to me as a child, but as an adult, I've come to realize that words can be powerful vehicles for either pain or support.

We'd like to believe that family and friends want to offer words of support when hearing about a new cancer diagnosis, treatment decision or prognosis, but sometimes words unintentionally cause pain.

Recently, someone in my family was dealing with her second round of chemotherapy for recurring breast cancer. When asked how she was feeling, her response took many people by surprise.

She said, "I hate when people ask me how I'm feeling because I always wonder if they want me to actually tell them or if I need to protect them by just saying fine." What seemed like an innocent, well-intentioned question felt unsupportive and insincere to her.

I can humbly admit to having been both the sender and recipient of similar exchanges. Sometimes because of our discomfort with hard conversations or a need to "fix it" we may turn to phrases such as "at least it isn't terminal", "I'm sure you’ll be back to your old self soon" or "I know how you must be feeling".

While these words are meant to encourage, they can come across as minimizing the experience and consequently stop any honest communication about what is really happening for the cancer survivor.

As I mentioned earlier, most people have the best of intentions to provide support during difficult times, but may find it hard to find the right words to convey how they feel.

Perhaps just honestly putting those feelings into words would be helpful. An example might be: "I'm not sure what to say. I really care about you and want to support you. This is such a difficult thing to talk about but most of all; I want to be here for you."

As a cancer survivor, you've have probably heard many comments that felt awkward, hurtful or at best, unhelpful. I'd love to have you share one of them and why it felt hurtful but also, what would have been more helpful? It may be a wonderful way for us to learn from each other.

The worst thing I heard came from a friend Id known for 42 years. She'd been an RN on an oncology ward for several years. When I called her and told her I'd been diagnosed with ovarian cancer she said "Wow. I always thought I'd probably die before you, but it looks like you're going to blaze that trail." I stared dumbfounded at my phone, said a quick goodbye and hung up. Really hurtful things were the local friends who could not be bothered to visit me during any of my 4 two-week long hospitalizations, while another friend flew up from Florida, unasked, to care for me at home for nearly 3 weeks. My family is so very supportive.

Anonymous

August 5, 2016 1:41 p.m.

It's not what the average person says that irritated me; it's all the articles that the professionals write with headlines that claim doing certain things will PREVENT cancer. I'm here to tell you that you can do everything to stay healthy and still get cancer. "Prevent" is the wrong word.

J.Ross

August 5, 2016 10:13 a.m.

Perhaps just honestly putting those feelings into words would be helpful. An example might be: "I'm not sure what to say. I really care about you and want to support you. This is such a difficult thing to talk about but most of all; I want to be here for you."
This to me sounds just as artificial and incinsencere. Yes words matter, but the old "I'm here for you" is out moded. Find a way to say those words without saying those words, i.e. individualize.

sylvia

August 5, 2016 9:09 a.m.

One of the most "unhelpful" phrases I've received is... "I'm sure everything will be okay." ...well really...none of us know what the outcome will be.

Linda Harrison

August 4, 2016 9:47 p.m.

Hurtful: Don't worry about work; take as much time off as you need. We've got it all all covered so no need to hurry back.
What would have been helpful and supportive: We'll miss you around here; we can cover for you but it won't be the same.

J. Lawrence

August 4, 2016 9:11 p.m.

After I was diagnosed with uterine cancer and had a total hysterectomy, one in-law said "It was just minor surgery right?" I don't think any significant abdominal surgery in minor and I felt that she was trying to minimize the condition as just being told you have cancer is far from 'minor' and is a concern long after what is hoped to have been a successful surgery. Please don't try to make someone feel better by minimizing the concern. Cancer is a big deal for those diagnosed with it.

Anonymouse

August 4, 2016 6:45 p.m.

Thank you for your insightful comments. Most my friends and family were kind and supportive during my dreaded stage III BC experience. I heard some v clumsy comments but not once did such statements come from a place other than love and concern and I knew that. One of the sweetest things was a card sent by a friend with nothing in it but her name and kiss and I thought absolutely right what can you say.
However when I was first diagnosed I received an email from some busy body I didn't even know telling what I should be eating. It took me all my will power not to respond with where they could go! It also made me feel like I was an object of gossip.
Still I would not have made it through that dreadful time without the support of my family and friend. I also made new friends and reconnected with lost friends, I was blessed. Yes I am scared the cancer will come back but that is my struggle and will not inflict on others and if it does come back I know I will be supported .

Donna

August 4, 2016 6:16 p.m.

Thanks to all of you who have posted. (and thanks to Mayo Clinic). I have just been diagnosed with advanced prostate cancer, with hormone therapy planned. I will be 70 soon, no longer a young man. Like many of you, I lost my mother to breast cancer. I have already experienced an odd comment from a friend, and I attribute that to his uncomfortableness with my predicament. My loving wife and sons and brothers and in-laws will go through this with me...and that will give me peace of mind to move past the odd but well intentioned comments from others.

Joe in Virginia

August 4, 2016 1:23 p.m.

I'm 65 and was diagnosed with Stage 1!BC (ER+, Prog+ Her2 -) in April. I just finished radiation 2 weeks ago, and am ready to start an Aromatase Inhibitor. My prognosis is good, but it is still "The Big C," and it's scary & challenging. The comments that irked me the most were from people who wanted to dissect my diet! I got sick of all the amateur experts telling me what foods to avoid & what to eat. The underlying message was, "if you had only followed this particular diet, you wouldn't have cancer."
Love to all of you fellow cancer journey-ers.

Sharon M

June 9, 2016 7:55 a.m.

"You're so lucky you get to wear a wig. Look at my frizzy hair in this humidity." That ranks as one of the dumbest things someone said. Lucky and wig should not be used in the same sentence. A better comment would have been "Your wig (or your "hair") is very pretty. It must be very hot. How are you doing in this heat?"

Karen

May 8, 2016 12:01 p.m.

i am a 3 time cancer (have been clear for many years now).
i was treated tip there was no more could be done. (35 more spots taken
out at this point).
i believe i never got thru it til i went thru the grief process. "always thought i would beat it".
i ended up with no more could be done. i got so angry after going thru
everything for YEARS and then to be told no more could be done.
i was angry for 2-1/2 weeks. then finished all the grief process (for the first time).
it is about 15 years later and am still clear of cancer.
i feel grieving and working thru all the stages of the grief process has
helped my immune system stay healthy.

Rita O'Donnell

April 28, 2016 12:06 p.m.

I have had cancer for eight years, endometrial that spread to my lungs, bones, and brain. Right now I am recovering from brain surgery and adjuvant radiation. I've never been so tired in my life, and I am very dizzy so I can't drive or walk unaided. People have said some strange things to me, mostly from not understanding the extreme fatigue. Some people think it's just a matter of willpower to get up and go. I thought that too, until I read a helpful article from Duke University on post brain surgery fatigue. I sent the article to my friends with no comment. It has really helped them understand. I think most people are just uncomfortable and don't know what to say, so it's best to be forgiving of mistakes in their comments and just be glad they care.
The one thing I wish people would not do is send me articles like Bollingers ridiculous cancer cure through alternative means and articles on how sugar feeds cancer. People with no scientific background think these things are helpful,

Melinda

April 28, 2016 11:33 a.m.

So glad your treatment is done. But are you sure they got it all? How horrible to ask someone that

June

April 13, 2016 9:27 p.m.

I was told that I was "lucky that I had the sexy cancer". The person was referring to my breast cancer and how there seems to be lots of support for it.
What would have helped? If she didn't minimize the fact I was dx with cancer. Yes, there is lots of literature and support but it's still cancer and scared me.
Maybe she could have said, " Breast cancer is one of the cancers that has lots of research and support, have you accessed any of it?"

Betty Ann

April 5, 2016 10:44 p.m.

Coming from a chemo patient now I always see the beauty in the people who are taking care of me. My Standford care in Los Gatos CA make me feel like I am not sick which keeps us positive and that is the best thing for us.

Melinda Perez

April 1, 2016 4:31 p.m.

I have finally got friends to ask me 'how are you today' so I can simply say 'not good' or 'fine'. This saves awkward moments and I have learnt that generally people do not want to know even with the best of intentions, they do not want to hear the nitty gritty, so quickly move on to another subject.

Pauline

April 1, 2016 12:09 a.m.

I don't want to hear "God won't give you any more than you can deal with" or "at least it's only breast cancer." But my least favorite comment was "How great! Now you will lose weight and get a boob job." Not only was that insulting but I guarantee any cancer patient would happily be over-weight and have unappealing breasts if it meant they didn't have cancer.

Stacy

March 31, 2016 11:35 a.m.

Im sure many of you here have heard this one:
"If you are going to get cancer, breast is the best kind".
I heard that one several times from a close friend, only to make me feel diminished for the fact that it was treatable. I suppose, how I got there (double mast/chemo/rads/tamox) is irrelevant. Again...REALLY!

Jeanette

March 31, 2016 3:27 a.m.

I really dislike the words 'survivor' and 'warrior'-were my friends who didn't survive not warriors-they didn't fight hard enough? Everyone asks if I feel back like my old self, normal-I respond simply that in fine but doubt I'll feel just like I did before ever again. They don't understand the residual effects after chemo/surgery for Stage 2a BC and the fact that I'm not cured-I'm in remission.there is no ute and it can come back in 1, 2, 10 or 20 years. I've heard other people with BC say their doctors say they are cured and I think this is dangerous. What is like to hear is-that really sucks, what can I help with? Or let's do something for a distraction, what shall we do? Or can I help by collecting your kids? Just be honest and not belittle my everyday fear that it can return.

Elizabeth

March 30, 2016 7:20 p.m.

Hello, I do understand that words matter. I completed my last treatment this past November. My treatments took over a year for Estrogen positive, Progesterone positive, and Her2 positive so it was an ordeal, and I did decide to be alone much of the time. But I would say that I appreciated that friends cared enough to ask how I was. I would say ignoring a friend's illness for fear of saying the wrong thing would be the worst. As with all relationships, we all say certain things that we know could have been phrased better. But consider the intent behind the comment and likely it was from a place of love. But we are all different in how we respond to others in such a crisis.

Susan

March 30, 2016 7:14 p.m.

I found most people to be very kind and supportive. However, There were 2 different instances where people wanted to tell me about their own friend or family member that died of breast cancer. I know that they didn't me to upset me, but 6 years later it still strikes me as completely insensitive. I also didn't appreciate when friends tried to minimize my diagnosis...that stung. Proud to be an 8 year survivor!

JBE

March 30, 2016 6:15 p.m.

Deborah Carroll Yes so true-they wang to be comfortable. Prople expect me to make hem comfortable and act irritated when i dont assure them i am well.they also seem tired of the cancer treatment taking so long and i think they want me heskthy and normal-but they are very much hurting me by trying to somehow make me say i am ok. No i am not,and i have suffered enough to feel entitled to not have to make healthy people comfortable.

Jane does

March 30, 2016 5:56 p.m.

Pretty much everything that starts with "at least it isnt"-it neber helps,it always alienates and mames me think i will not say anything next tome because people are belittling this. The trestmeng has bern lastu g for years and i still awayut anither surgery,my heslth is forever losg because the meds harmed my body in many ways. I am disfigured forever. I will meber be healthy or pretty or strong or become a mother ever again. People disappeared during those years, sometimes they seem to appear just to say some minimizung comment when they hear u am not healthy, or happy.they say some at least - comment then disappear again. My mother died just before this so i have not much family support,my dad is gre
At but very old. So i hate it when people never help and when they already pretend to have a discussion they stop me before i say a complete sentence. I AM STILL SICK AND YOUR WORDS ARE MALING UT MUCH WORSE.

Jane does

March 29, 2016 10:18 p.m.

I guess the worst was no comment at all. Friends of 25 years had spent a week with us during what turned out to be two weeks my wife's diagnosis of NH lymphoma, stage 4. The husband in this couple is a doc and had been very attentive during some cardio issues of my own a few years ago. But after they learned of my wife's diagnosing they literally blocked us out of their lives. I say "literally" because when I tried to call them to see if _they_ were OK, I got a message saying our phone number was blocked from their line. I was knocked over and retried. Same thing. No word, no explanation, just poof. And at the worst time. There was nothing in the relationship that would have provided a clue that this could happen. And no response to an email simply asking (actually providing multiple choice possibilities!) of what happened. It was the cruelest and most cowardly thing I'd ever experienced.

HG

March 28, 2016 10:31 a.m.

After being diagnosed with Stage2A, HER2+, I had a bilateral mastectomy with no reconstruction. On my second day back at work, a male told me that I did not look right without "those" (breasts). I was still too tender and just sat and cried.
What I say now is, I chose to have no reconstruction as I felt like every time I would look at the new breasts, I would worry that the cancer was there.
This is a personal choice and a very individual journey; I am strong enough to make that statement now, but wish others could take a walk in my shoes to experience the life changing diagnosis.

Betty Vaughan

March 28, 2016 6:05 a.m.

My biggest preoccupation, when talking about cancer is that it's portrayed as the big "scare" word, like the black devil has entered. It is foremost an illness - a dysfunction of the body's workings and I believe that if attitudes can be modified in the general opinion, this would be beneficial to all cancer "and future" patients.
There is another attitude that is assumed in ignorance and that is the commonplace saying "you will fight it, she or he is courageously battling" WHY fighting/battling? Do we use this automatically for other illnesses?
Can we first of all take the scare out of Cancer and promote associations that advocate simply taking time of to take medical cures and aiding in using associated self help healing methods, like yoga, self-hypnosis, understanding the chemical médecine used and it's possible side affects. It's not a fight or battle, but a time to concentrate on bettering a physical crisis or illness.
Most ex cancer patients live life more positively and joyfully after and realise that the difficult passage was beneficial to being freed of mundane preoccupations such as anxiousness, depressions or worries.
Today, still, Cancer patients are made to feel like they're on a lonely planet, out of the normal world. It's a dizzying viewpoint, almost psychedelic, and when people try to aid with mundanities, like unscaring you or telling you to battle and fight, these poor patients feel pushed even further away from normal life. It becomes terrifying somewhere........
I advocate being true, loving, caring and asking questions to be able to understand what the problem is, letting the patient talk and feel that he or she has, or is getting control of the situation. The road ahead of treatments and telling the patient they'll be there all the way.
I am grateful to all my family and amazing friends who simply were there with strong care. They were part of my cure.
I fired my naive GP who wishing to be psychologically helpful, asked me if I was afraid of maybe facing this possible viewpoint of death!!!

Jennifer.f

March 27, 2016 10:53 p.m.

just listen!!

ssttella

March 27, 2016 7:12 a.m.

Easter Sunday, for me a day of renewal. I am not my cancer, it is separate from me. I will not allow it to dominate my thinking as it has my physical self. I can do that today and let my spirit soar free. I will not interpret what others say as hurtful as they don't know what to say anymore Thai I know how to respond. Today is a beautiful day! I am me!

Anonymous

March 26, 2016 6:00 p.m.

When I was at my lowest during chemotherapy, I received a phone call from a Sister-in-law. She said she was thinking of me & asked how I was doing. To my surprise and hers, I told her. I said I hadn't been sleeping or eating and I wanted to die. I could tell she was shocked and to tell the truth, I didn't feel better at all by sharing that. So I would suggest folks not ask open-ended questions. Just say you love the person and you are thinking of them and you are happy to hear their voice.

M K Barrett

March 26, 2016 2:47 p.m.

I have found that the best way to deal with insensitive comments or lack of communication is to remind myself that each person is doing the best they can. And if their best doesn't feel good enough to me, I remind myself that there likely have been times when my best hasn't been enough either. Doesn't mean that I am not hurt but does help me to have a better understanding of what is going on.

Eilidh

March 26, 2016 2:25 p.m.

Cancer cannot be fought alone!
When diagnosed with breast cancer, facing a double mastectomy and a year of chemotherapy every three weeks, I was crippled with anxiety. I knew that I needed to personally tell a handful of people. I used email to inform others and kept up a three week email update through the worst of the first eighteen week chemo regimen. Best support came from those who cleared their calendars and drove me to appointments or showed up on my doorstep with a meal. Those who cheered on my fight and strength through phone calls, cards, and emails renewed my faith that I would survive on the other end. My church prayed for me, as well as a convent of retired nuns and a prison of men. Like many of us in the cancer world, however, I heard some very odd comments. Worst words to one whom I needed to tell in person were, "Are you going to go for double D's?" Another in the medical field negatively challenged, over and over, my treatment plan.
My husband bore the brunt of nearly everything that involved my care and general home responsibilities. Very fortunate I am to have had him in my life. Our two children, grown adults and out of town, visited so often through that dark year, I gave up counting the many times they came home. Unconditionally, we loved one another and did the best we could do.
Despite the few toxic people who dampened my spirit, I know I am blessed with many good ones who had my best interest in their hearts. Their energy stamped out the poor comments made by those who should have known better.
My suggestion to anyone walking into the very scary cancer realm, take on as many family members and friends as you can. Sort out those who drag you down, and welcome the love and support from those whom you can count on.
You will need them.

Stephanie

March 25, 2016 9:47 p.m.

I have battled two cancers in the last 4 years. Chemo, radiation, and abdominal surgery. My siblings were all very helpful. We were raised to take action when we are needed. No words needed to be exchanged, they went straight to work organizing rides, etc. What really hurt me were people that I thought were close friends. They started grieving right away. They would call me(never actually rang my doorbell) sobbing and I actually had to listen to them prematurely grieving my death! They were unable to see me suffering, so I did not see them for a year! It is hard to forgive them, but I know I have to try to understand their inabilty to be there for me.

Mary

March 25, 2016 6:50 p.m.

While visiting who I thought was my very best friend,she asked while getting ready to go out for dinner what was I going to wear to cover up my scars. My scars? I'm not going to cover them up with anything!!! Today I'm a 6 year survivor who wears her beautiful scars proudly!!! I still shave my head because of chronic hot flashes which they have no cure. I will forever be bald for all suffering from any kind of cancer!!!

Irene

March 25, 2016 5:43 p.m.

Someone told me I should think of the red devil as a red angel because it would cure me.
People told me I looked fine, when I could look in a mirror and see I aged 20 years in 2 months.
14 months into an 18 month treatment program people are tired of it and think I'm malingering when I get fatigue.
Unless you've been through it you just don't understand

Lynda Keen

March 25, 2016 1:01 p.m.

After breast cancer surgeries and i completed Chemo, i still had 33 rounds of radiation to go. I live an hour away from cancer center and since I did not know what to expect from treatments, my husband and I were trying to figure out how i would get to treatments everyday in the event i could not drive. While speaking to one of my sister in laws who lives 10 minutes from the cancer center, she says "id drive you to your treatment one time, but its far and id have to make 4 trips". Gee! Was that suppose to be helpful because it wasnt. To boot, one would think she would offer to pop in to see me during any of my chemo/radiation treatments living so close to the center, but not one visit. Nevertheless, sure made her way to my house the following summer for our family bbq. AMAZING! very disheartening. I received more support from total strangers.

Jeanette

March 25, 2016 12:39 p.m.

I am a breast cancer survivor(5 Years). On purpose I did not tell most relatives anything.
Except 2 people. At a birthday party the Nieces who are getting to be in their 50th and breast cancer becomes a "concern". I was sitting there and not saying anything. Then Angelina Joli came up. I said "I asked to have both breasts removed, but the insurance won't do it Like I dropped a bomb. I would have appreciated a change of subject. But I do understand the nieces getting to this stage in their Life. But could not think of a way to leave the table. Awkward for all. Should have just gone to the bathroom. Now I think of it!! duh!
Mks

MK Sapyta

March 25, 2016 11:47 a.m.

As a lung cancer participant for four years I've heard just about everything. I truly believe that there are NO words that help. What helps, in my opinion is a warm hug followed by a sincere smile.

Evan M Codell

March 25, 2016 9:09 a.m.

My husband has cancer and has for 6 years. He wants to talk about it and what he's going through but I lost a son last year to lung cancer and he wouldn't talk about it at all. I think it depends on personality. Just listen and you can get a feel for their feelings. I think the quiet ones just want normalcy. Let them know you are there for them but try to have normal conversations about things you would have discussed before their diagnosis. It's natural to ask how are you but that seems cruel. Good morning might be a better way to begin your conversations. Or did you watch the game last night.

Linda Sprinkel

March 25, 2016 4:38 a.m.

I had a cousin say to me and another cousin (we are both breast cancer survivors) 'I would rather have breast cancer than dentures. At least YOU can still eat broccoli' She was serious. It was extremel awkward and insensitive.

Valerie, Canada

March 25, 2016 2:12 a.m.

Don't worry you'll be ok. This comment was hurtful because of the after effects of chemotherapy. I will never be,"ok" again. And then to hear I have relapsed, now what? The words still echo and makes me angry. I almost want to say, remember when you said I'd be ok, now what???

Yvonne

March 25, 2016 12:10 a.m.

I have spent a lot of time thinking about this. Both my wife and I are psychotherapists. Both of us became cancer patients this year.
I am also a university prof, and I have started to teach on exactly this question--how do we respond when it feels like there is no adequate way, what are the consequences on all sides of not responding, and all the complexity involved. It has been amazing in that students have had a chance to think together about their own experiences--whether responding to someone close who received a very serious diagnosis, someone going through a terrible loss, and other foundational experiences of life (which inevitably includes the realities of loss, death and periods of suffering).
There is a great deal of seasoned wisdom that emerges when people think together about this. I have certainly learned as much from them as the other way around. And I feel I am teaching something at least as useful, in the lives of my students, as anything else I do.

Professor Hank

March 24, 2016 10:51 p.m.

I had someone tell me that I wouldn't have the rare cancer I was being treated for if I drank kefir everyday. My pastor told me that sometimes people believe that if they are doing something that you aren't doing then they won't get what you have. It's a defense mechanism. And it is hard to know what to say when asked how you are doing especially when treatment goes on for years and you don't necessarily feel good but you look fine. My standard reply has been, "Still hanging in there" said with a smile. Most people mean well.

JM

March 24, 2016 9:52 p.m.

I have colangiocarcinoma stage IV
The worse - nothing. I had a friend who I thought was a good friend. Other than the occasional Facebook comment I've not heard or seen from her at all since my diagnosis a year ago. She lives 1 mile away. The Facebook comment? "You're a fighter" How would she know? I'm very sad whenever I think of her.
The second worse - "you know there's a cure for cancer but they're keeping it a secret". Really?
The best - I'm taking you to chemo this week, I'm bringing dinner over, let's meet Wednesday for lunch. What does not work is " let me know if I can do anything for you". That requires that I ask for help and I'm not good at that.
As for conversation, just be genuine. Ask only if you want to hear the answer. Don't say something just because you feel you need to say something. Give a hug instead

Linda

March 24, 2016 9:23 p.m.

I had some women at work ask me if I thought I got breast cancer from being on birth control pills for so long. The answer is yeah maybe but I don't need to feel guilty for contributing to my getting cancer. I'm upset enough already. I think they might be worried that they could get cancer or they havn't taken much or any birth control pills and it makes them feel relieved. Whatever the reason it's rude. I hate hearing that question the most.

Sue Henderson

March 24, 2016 9:01 p.m.

At my first visit back to a family reunion after surgery and radiation treatments for breast cancer, a relative in a loud voice, blurted out "What's your prognosis?" like I was already a statistic and she showed little concern for my feelings.
On the other hand when our son told us he has prostate cancer, I said I was very sorry and he replied, "I don't want people to pity me".
A good friend sent ma a card that said "recovery is one step at a time and I am here to help you - call me and we can talk about it". She helped me make a banner for our grandaughter's wedding later that summer. That was good therapy and gave ne s goal to look forward to.

Marion

March 24, 2016 8:45 p.m.

I was Diagnosed with Non Hodgkin Lymphoma early in 2012 which devastated me initially. As I progressed through six Chemotherapy Sessions besides coping with the changes that the chemical did to my body, I was amazed that some folk did not phone or send a card or contact me in this town.I live in a small rural town 100 mile from the nearest large town. Hence I felt so lonely and alone during this time and it has taken me a long time to come to terms as to why people reacted in this way. Fortunately I have a caring and loving husband and a supportive family and friends who helped me through this ordeal but except for my husband these family members and friends do not live nearby. The good news for me is after completing treatments I am now in "Remission" and once again enjoying a good quality of life.

Eileen Mellor

March 24, 2016 8:31 p.m.

My mom lived ten great years after a breast mets diagnosis. She did very well with most of the journey, except when someone would say to her, "You look so good!" She would humbly reply, "Thank you", but I very time after the person was gone say, "Look good as opposed to what, death? Or How would he/she know, I only she him/her every three years." This comment bothered her so much that I would see a change in disposition for half an hour. Since her experience, I have never said that to anyone. Instead, I say something like, "You have been on my mind lately" or "I admire your fight, I would like to do something to help if you would allow me." Just the same after she died, it bothered me when someone would say, "I am sorry for your loss." As a very competitive person it was a double whammy, my mom died and then some was calling me a loser (basically because someone who loses something is a loser) on top of it all. Instead, I say to people, "I am so sorry to hear about your mom." Or "I really enjoyed any time I got to spend with your mom." I could write a book about this topic as I learned so much about it as we traveled her journey together.

Jolene Palmer

March 24, 2016 7:43 p.m.

I have had people ask me why I'm gaining weight when you're supposed to lose weight during cancer. I have metatastic Stage 3 Ovarian cancer and am currently receiving abdominal infusion chemotherapy in a clinical trial for my 1st reoccurance.
Which incidentally causes the constant questioning of when will my treatments be done?

Shirley

March 24, 2016 6:56 p.m.

When in remission after stage 4 laryngeal cancer I received a lot of " I knew you could beat it" or "I knew you'd be okay" comments. Although I'm sure it was said with the best intentions, it sometimes made me feel like they were minimizing the fact that I had just come through the most terrifying battle of my life. I think it would have been better if they had said "wow! That must've been tough,it's great to hear you've won that fight" or something like that.

marsha

March 24, 2016 6:54 p.m.

after having a real rough 10 days with chemo, daughter texted and asked how I was doing (she had brought food by during the first rough spot. by that time I had gone from constipation to throwing up to diahrea. I told her I had diahrea.And as what text messaging is, I hear nothing. I try to stay realistic as I was her age when my single dad got lung cancer. I wish now I was more there for him. I work hard at accepting that my kids are kids and they assume we will live forever and I don't focus on what I wish it was. No sense making myself feel worse.

shariz

March 24, 2016 6:52 p.m.

When I was diagnosed, I was told "if you are going to get cancer, breast is the best to get", REALLY! :-(

Jeanette

March 24, 2016 6:15 p.m.

"Just let me know if I can do anything for you". Be specific. I am going to the grocery store. Have your list ready. I am bringing dinner tonight. I can drive car pool for you during treatment. Life goes on and chemo, surgery etc are exhausting. Help with chores!

Lana Elmore

March 24, 2016 5:15 p.m.

Please do not ever ask a survivor if they are feeling okay because they don't look like they are. It makes you feel very paranoid and questions your survivorship.

anonymous

March 24, 2016 5:01 p.m.

When I moved to N.C., I got a new gp - in the Duke system. At the first appointment, I told this doctor that I was pretty sure I had suffered some chemo-brain. He snickered. I couldn't believe it. I'm now looking for a new g.p.

Nancy

March 24, 2016 4:37 p.m.

I really appreciate all of your comments as my sister is on her 3rd round of chemo. Can I hear more helpful things to say or things to do for her?

Christine Sieberg

March 24, 2016 4:01 p.m.

I understand how you feel, don't ever say, I don't understand.(This was sayed, by a caregiver.)
Or let know when something is wrong. Then when you tell them, they just look at you.

Pat

March 24, 2016 3:47 p.m.

My comment has been, "How is your day going" feel it relaxed the obvious tension

Neil GorrieATCA

March 24, 2016 3:18 p.m.

I'm undergoing my 4th cancer. The first three were stage 1 all in different places no lymph nodes involved. This one #4 is different it's stage 3...
Since I now know quite abit about cancer what I ask others who have it is...
How do you feel after being told you have cancer, if you want to talk about it I'm always available.

Donna

March 24, 2016 3:06 p.m.

The best/worst was, when I said in a group that I had peripheral neuropathy (numb fingers) from the chemo, and that I had a keyboard exam coming up in a few weeks and that would be difficult. A man in the group said "A friend of mine has had bucket loads of chemo and she's never had anything like that." Was he suggesting I was lying? Or just making it up to gain sympathy? Or what?
It would have been more helpful to say almost anything else. By that stage in treatment I had found out that we, the people with cancer, have to help the others to deal with their feelings. Which is a bit tough on us.

Chris UK

March 24, 2016 2:49 p.m.

Thanks Lonnie for allowing us to vent our frustrations with have cancer! Your
column has become a great outlet! Cancer patients and survivors have so few!
Warm regards,

Pat C.

March 24, 2016 2:45 p.m.

The care providers often say with co concern ....you have advance stage of cancer. It cuts to the core. It needs to be rephrased as we all have HOPE that doesn't need to be taken away!

Leah Lommen

March 24, 2016 2:28 p.m.

As a 3rd recurrence survivor, my fear has also returned with each one. It really
hurts when anyone, including family or friends say, " but you look so good!"
It minimizes the pain, emotional stress and side effects I experience every
time the cancer reappears! They don't see the damage caused by various chemo drugs and frequenting monitoring. Especially as that becomes one's main activity and way of life for the patient and caregiver! Having treatment and blood cell monitoring every 28 days doesn't allow travel or any other extended
recreational activity. Thoughtless comments can really hurt!

Pat C

March 24, 2016 2:12 p.m.

I fully agree with your views. Though you know if a person is in his/her last stages with cancer & cannot survive, one can see a sparkle in the eyes of patient when you say that he / she are getting better by the day !! That is my experience being a treating cancers with herbal medicine !!

Shankara Rao T S

March 24, 2016 2:04 p.m.

As a Stage IV Ovarian cancer survivor, I can attest to having been through all the comments made to me when other didn't know what to say. However, I knew they were speaking from a place of love and concern and found that when I told them I expected to survive and I believed in miracles, they too believed. I was always positive and never gave in to being negative.
Now, I am told I am a miracle as at one one time I was in ICU and I was truly at death's door. In addition, now I mentor 10 other Ovarian cancer ladies. To me, this is a miracle.

Jan Towers, Olathe, KS

March 24, 2016 1:53 p.m.

I have CLL and most of my friends and all my family know, so I HATE it when friends who do know say "you look like you've lost weight" or "you're looking thin" - gaagh! I'm in my mid-60s and weigh circa 60kg, I haven't actually lost any more weight since diagnosis 18 months ago - why are people so insensitive? I then always act very defensively and respond that I'm trying to put on weight, not lose it and I'm fine! (Not having any treatment)

Margaret O

March 24, 2016 1:51 p.m.

"My niece had ovarian cancer, too. She was dead within 6 months". Not helpful, better to just say aww.

Theresa Beach

March 24, 2016 1:47 p.m.

SEVEN YEARS AGO I HAD ESOPHOGUS CANCER SURGERY AND BEING HERE TODAY I AM TRULY Blessed.
I agree with Lonnie"s comments. Offer your support and follow up.
laus deo

LARRY

March 24, 2016 1:39 p.m.

Is it common for people NOT to call or communicate at all, particularly
when there is a cancer diagnosis that might be rare and sound very scary?
ie: brain tumors, leukemias, etc....also, what to do about "gossip", and
hppa, not being respected...

Katy

March 24, 2016 1:15 p.m.

I am Thyroid Cancer Survivor. When I was first diagnosed in 2008 , I called my best friend in college and informed her of my diagnosis. Her first comment was" Oh my God, are you depressed" ? I answered, "should I be"?
I told her that she always knew me as an upbeat and positive person and cancer has not changed me a bit and my perspective in life is just the same. I told her that it's just one of life's nuances so I deal with it like dealing with anything else dished out to me by life.
She was apologetic after that and said that what she meant was she hoped that I was dealing with it ok.I told her not to worry because I am a trooper.

Cherry Sloan-Medrano

March 24, 2016 1:13 p.m.

Someone said to me "well did they get it all ?" Not helpful

JJean

March 24, 2016 1:08 p.m.

Mom died at age 56 after alternating bouts with Hodgkins Lymphoma and 1970s-era chemotherapy treatments. I was 25 then, and I still regret my insensitivity regarding her affliction and treatments.
I am 68, a bladder cancer survivor, and I can now more adequately relate to Mom's previous condition and state of mind. I certainly believe that empathy for any cancer patient can best be expressed, per this topic, by Lonnie Fynskov, R.N.'s comment:
"I'm not sure what to say. I really care about you and want to support you. This is such a difficult thing to talk about but most of all; I want to be here for you."
I only wish that I had expressed that to Mom.
Mahalo, Lonnie.

Jack Faessler

March 24, 2016 1:07 p.m.

When I was going through my cancer treatment, my best friend would often ask: how are you feeling? Better?
In other words, she didn't want to hear the more unpleasant aspects of my surgery and subsequent treatment.
I knew that she wanted me to be healthy again, that the whole awful business be over with quickly and that she prayed for my speedy recovery, but instead of asking what she might do for me (as you suggested) she needed to hear a response that would comfort her.
I've been quilty of such responses myself, so I understand and I've learned, as a result.
Thanks for the helpful and thoughtful colum.

Deborah Carroll

March 24, 2016 1:07 p.m.

I did not appreciate when people told me to stay positive either. It just adds more pressure, like I should always be happy in front of everyone. I really felt I was doing a good job dealing with cancer. If I shared a bad day, then they would have a story about some heroic stage 4 person who was a perfect cancer victim. I wanted to be authentic and real, not perfect. It felt the best when someone looked happy to see you and that they think or pray for me often.

Sandy

March 24, 2016 1:02 p.m.

I was stunned when a good friend said "You don't look like a person who has cancer!" Thinking about how many people in so many stages of the disease I have known, I wondered what a person who has cancer does indeed look like. And, what was she expecting? I took my breath away.

Helen

March 24, 2016 1:00 p.m.

I have a room mate who asks me the same question every day, "How ya feeling?" If I give an honest answer such as "My neuropathy is really bothering me today," she will come back with, "I thought it was getting better," in a sort of accusatory tone, as if I'm doing something wrong by not being better.
On the other hand if I say "I'm fine" or "I'm doing better" she seems to think I mean that the condition is permanent and I'm ALL better and she will hold me to it. I can't win.
I know my friend means well, but most of the time it seems insincere. She seems impatient for me to be OK, so she can feel better about the situation. I think my illness makes her uncomfortable.

Marilyn

March 24, 2016 12:45 p.m.

Because of the chemo, my face had swollen a bit and an acquaintance saw me and said "I hardly recognized you!" I felt like melting right there and then. After a few minutes, I realized he meant no harm and I had to forget about it and move on.

Pauline Ste Marie

March 24, 2016 12:45 p.m.

I hate when people tell me how good I look that they can't believe I'm sick. Then they assume that you are fine and all should be normal!
The next is that the weight loss looks good on me. Seriously???

Terry Christopher

March 24, 2016 12:42 p.m.

I am a strong positive person but I have very dark moments in private. I have palliative care for liver cancer and have had stage 4 HCV cirrhosis for a long time. My friends and family tend to behave as though this is non existent which is probably my fault as I don't want cancer to define who I am. It is a double edged sword - they don't know what to say and I don't want to focus on it. It is a lonely battle.

Maxine

March 24, 2016 12:27 p.m.

What bothers me the most is when people tell me to remain "positive" and how much it matters when they haven't even had cancer. I didn't feel positive, nor negative, just mostly stunned (at first) and then just focused more on exercise and what I ate.

A mom

March 24, 2016 12:26 p.m.

Both my mother and father died of C.mother of Ovarian
and dad Colon in 1968. Became a nurse in my early yrs
first career, worked in Oncology. I certainly know
from my history from from my dad's diagnosis in 1959 to present what tremendous
advancement in the cure for this horrific disease.
I am now 66 and in my fourth yr of fighting my own
Breast C. Hopefully good new next month after my
mammogram. My husband died 16 yrs ago today Mar 24
He went to Mayo in Rochester for a liver transplant.
Didn't make it through the last test before surgery. Itook him home to die. He live 2 more wks. Iam a California gal born and home for 66 yrs. I moved to
Nashville to be close to my brother. He is the only
one left in the family. He nevers mentions my mom
and dad and never says anything about my own Cancer
fight. He has given me a positive thought or feedback. He only has worked for the SDA school
systems for 30 yrs. He is a devote SDA but I think
something is terribly wrong that he never supports my hardships and lonliness and the fight I have within myself regarding my own battle with this disease. Just food for thought. It would be nice
for feedback. Thank you.
tmy horrible.

kathryn Vellema

March 24, 2016 12:22 p.m.

I don't have a negative experience, but a real one...my friend was battling cancer and doing treatment and whenever I asked him how do you feel, he would say "with my hands". I never understood until I got appendix cancer and when people ask, you don't always want to be negative, or really want to say, I feel horrible, this is horrible, I hope you never experience it, but because you know people really do care and that is why they ask.
So now I understand..."How do you feel?"...."With my hands"...has a different meaning to me

Lana Matt

March 24, 2016 12:13 p.m.

I hear "You are strong you will lick it" It is so dismissive
and feels like a quick way for them to get out of the conversation.

kathy San Francisco

March 24, 2016 12:13 p.m.

Ah.. best intentions: sometimes it is just best to say you really do not want to talk about it right now... As a cancer survivor I have had many people say: Oh it's just breast cancer... not terminal!"

Anonymous

March 24, 2016 12:10 p.m.

I really liked Lonnie's suggestion for a comment to use while talking about cancer; one that did not minimize the experience, like so many others. Just expressing true concern and a desire to be supportive in any way and whenever needed is the best way to express one's true feelings.

Ken Cogswell

March 24, 2016 12:08 p.m.

Silence. That was one of the most devastating reactions. People - including members of my immediate family acted as if 'nothing is happening'. I wasn't looking for attention or sympathy but would have appreciated a few words of interest at least and perhaps a bit of empathy during the six months of treatment. Even after my 'recovery' no one has asked me about my physical or emotional status.
People in general are fearful of threats to their life as displayed in the lives of others. So, cancer people - suck it up and live with the reality of unintentional insensitivity from others.
p.s. A friend was diagnosed with Hodgkins lymphoma. She was walking downtown and saw 'one of her best friends' coming toward her. This 'friend' saw her and intentionally crossed the street to avoid meeting her. How's that for 'treatment'?

Vin Murph

March 24, 2016 12:04 p.m.

I think the most funniest one I heard, was right after my non-Hodgkin's lymphoma diagnosis was "Well, can't they just give you a blood transfusion?" It took me a while to understand that many just don't know what to say, but they want to fix you when sometimes you can only be mended. My girlfriends were wonderful! They named themselves The Posse and organized who would drive me where, and brought me meals when I couldn't manage during the chemo. One came to get me when I ran out of strength in the grocery - she finished my shopping, took me home, put away my groceries and then fed me. They all just asked what they could do to help and were there, every time, when I needed them.

Paula in Colorado

March 24, 2016 12:04 p.m.

I had Islet Cell diagnosed 6 years ago and went through chemo and radiation. These past two months I've lost 17 lbs with regular diet along with 2 1/2 inches in waist. Is the mestasation to the liver, GI and GU tracts (seen on last scan) starting to take hold?
Kay

Kay Kramer

March 24, 2016 11:47 a.m.

I think the best comment I receive is "I'm so sorry you have to go through this." It conveys understanding of the difficulties associated with treatment. It doesn't judge my looks or attitude that day. It acknowledges what is going on without trying to fix or change or treat me differently. It says I care. That is just the right amount.

Felicia

March 24, 2016 11:46 a.m.

When it's a good friend, I say "that really sucks. What can I do for you?"

Carolyn

March 24, 2016 11:44 a.m.

After months of strange symptoms I told a friend that I had finally diagnosed with a rare type of brain tumor.She asked how they knew. To me it sounded to me like she thought I was making it up.I explained the Ct scan and MRI.She still didn't get it, and questioned my anxiety.
Very hurtful.

Rebecca Cowan

March 24, 2016 11:43 a.m.

Hi,
I lost both of my parents to cancer and 20 months ago I was diagnose with Diffuse Large B cell Lymphoma. I am now in remission - I thank God everyday for my gift of life. The one thing that hurt me the most is when people said to me that I knew my mom was going to die and it is a blessing she isn't suffering anymore. I understand what they were trying to say but yet I took it as I wasn't suppose to be hurting or surprised that they died. Words cannot describe the pain and hurt I felt when I heard these comments. I now never say these words unless the person who lost their loved one says it first. Just because we know our loved one is terminal does not take away the pain!! The only thing that is different with losing a loved one to cancer or suddenly with no warning, is the SHOCK FACTOR. For cancer, the SHOCK comes when you hear you have cancer and the second SHOCK comes when you hear there is nothing more they can do. Then the third SHOCK comes when they die. Yes, you are blessed with able to say your good-byes and make amends. But you still lose a piece of your heart. For losing someone suddenly - the SHOCK is very intense and you are unable to say your good-byes. No matter how a person dies - you are NEVER fully prepared to lose someone. I learned what not to say to someone who lost a loved one to cancer.

Stacy

March 24, 2016 11:35 a.m.

A friend told me "come on, you are making way too much of this." I received this response while being infused. I was deeply hurt.

Barbara

March 24, 2016 11:34 a.m.

When I was fighting breast cancer, I hated it when people said "I'm so sorry". They always looked at me with that "you could die" look and it made me feel worse. I believe they really wanted to say "I'm so sorry you have to go through this" but that was never conveyed. I vowed I would not tell another cancer patient how sorry I am but I would tell think that the situation really stinks but I would be there for them with support and understanding.

Tammy McKenzie

March 24, 2016 11:31 a.m.

My prostatectomy was exactly 20 years ago, tomorrow. It recurred four years later, and I've been battling it ever since. I've never mentioned it anyone other than my relatives and closest friends, because I didn't want to deal with the well-intended sympathy and sorrowful looks, which would make it more difficult for me to maintain a positive outlook (which I think is almost as powerful as the medical treatments).
Two months ago, the cancer surged with a vengeance, and I'm on another round of hormone treatment. One of the most visible side effects is severe hot flashes, turning my face red and soaking me with sweat, three or four times an hour, 24/7. That can't be covered up, and I can stay in the house only for so long. I have radiation and chemo coming up soon, so I've decided to tell people what's going on and realize that whatever they say, or however they look at me from now on, it's because they care.

Ken

March 24, 2016 11:20 a.m.

comments well taken,
thanks.

ron putz

March 24, 2016 11:20 a.m.

I don Like when people list all of the people that they've known that have died from cancer.
I appreciate when people offer a sincere comment, card or any small token of love.

Lisa

March 23, 2016 9:46 a.m.

My mother, age 84, is going in today for her first round of chemo, second time around. As with all situations in life, there are positive and negative outcomes. We have become much closer since the first diagnosis and 'survival'. This time, I am truly beginning to realize that she isn't going to be around forever. But she is a scrapper and plans to fight to the end!
When we spoke last evening, I just kept telling her how sorry and sad I was that she had to go through this again, and that I would call her every day and find jokes to tell her because she loves to laugh.
This time around I want to share and be of service to my sweet mother.
Diana

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